A programme offering one, standard, digital, urgent care plan is making sure that the patient’s wishes are taken into account by all who are going to be responsible for care. By Julia Riley
When a family member was dying of metastatic malignant melanoma, she wanted to remain at home with her four children. Yet, time and again, when she needed help in the out of hours period, a well meaning GP or paramedic would arrive, not knowing anything about her or her wishes, and she would be taken to hospital.
This lack of information sharing made an already painful situation much worse.
There is also the additional impact on the NHS. Twenty per cent of those in the last year of life have five or more unplanned admissions, creating an often unwanted burden for both the patient and the NHS.
Urgent care plan
It was for these situations that Coordinate My Care was created. CMC offers one, standard, digital urgent care plan, making sure that the patient’s wishes are taken into account by all who are going to be responsible for care. It includes information about the patient’s illness and medication, how and where the patient would like to be cared for, and people to contact in an emergency.
Care plans are created with the patient and a trusted clinician, and that information is audited regularly and shared appropriately at the point of care
It shares this information with all the health professionals who might be involved in treatment.
Enabling this change has not been easy. It has meant embracing the lessons that all healthcare organisations should apply to realise the benefits of a digital strategy, as outlined by independent health charity, the Nuffield Trust in its Delivering the benefits of digital healthcare report.
Culture change is crucial, and to support this we have trained over 20,000 individuals on how the service operates. This extensive training covers how to identify vulnerable patients, how to have difficult conversations around care choices and how to operate in a “virtual multidisciplinary care team”.
Patients have provided feedback on the development of the service at every important stage
The system is user centred, designed around the needs of both care providers and patients, and can be accessed by any type of mobile device.
To aid the clinician, GPs can access the record directly from their GP system; for others, a flag on the record is present to indicate the presence of a care plan.
CMC has been in existence for nine years, since the publication of the 2008 end of life care strategy. In that time, it has seen multiple iterations so that it can integrate into numerous NHS pathways, including those for out of hours’ GPs, 111 and ambulance services.
Coordinating this approach to care also requires robust interoperability. CMC is currently a pan London service, commissioned by the capital’s 32 clinical commissioning groups to ensure that patients can benefit from the service wherever needed.
Among patients who have created a CMC urgent care plan, just 18 per cent die in hospital, with more spending their final days in their preferred place of care
This has meant we have designed and delivered an interoperable solution, based on InterSystems’ HealthShare information platform, that can be seen by any legitimate and authorised user through multiple systems, and that draws in centrally managed data services such as the Spine.
Information governance and security, the final piece of the digital health jigsaw for the Nuffield, has been the starting point for the service. Patients, or their nominated loved ones, give their consent to create and share the care plan across secure NHS and social care networks.
Around 50 per cent of all deaths occur in hospitals nationally. Among patients who have created a CMC urgent care plan, just 18 per cent die in hospital, with more spending their final days in their preferred place of care.
There are financial benefits. An independent health economic evaluation of the service showed an overall cost saving of £2,100 per patient who died with a CMC care plan in place. If all patients who were predicted to die in a year had a plan, the total estimated cost savings, if they stayed out of hospital, would be £892,500,000, nearly a billion pounds.
The results for the patient are also compelling.
As Mary, a patient with renal cell cancer who set up a CMC plan in 2016, said: “Now I have a plan, I feel so much happier. Because I’ve got some control over things. I will probably need urgent care in the middle of the night again – that’s how cancer goes. But, this time, everyone will know what to do with me. They’ll know exactly what I have, and how it’s being treated. I won’t have to explain it all and repeat myself to different people. I’ll get the right painkillers, at the right time. And I’ll be in my own home, instead of sitting in pain in accident and emergency. I’ll get the care I need, the way I want it. Sitting here, feeling strong today, I can’t tell you how reassuring that is.”
Mary is one of over 35,000 patients in London who now have CMC urgent care plans. Her story is one of many that shows how we can achieve patient centred, integrated care. CMC demonstrates that by using technology, training and extensive engagement with multiple partners, this can happen. Something that should reassure us all.
Professor Julia Riley is a consultant in palliative medicine at the Royal Marsden and Royal Brompton trusts and the clinical lead for Coordinate My Care, which she established in 2012.